Monthly Archives: August 2018

Lily goes to a 12 month program which is super important for girls with Rett – consistent therapy (physical, occupational and speech) helps Lily maintain her skills, and learn new ones. Yesterday was her last day of summer school and tomorrow begins her whirlwind travels.

I was initially overwhelmed about trying to plan out Lily’s four week hiatus – will she be well enough to travel? Will I be strong enough (emotionally and physically) to handle traveling with her (even if she is well enough)??? Where will we go and what will we do?

There were so many questions and concerns ravaging my brain. I was frozen. I couldn’t make any decisions. And as many of you know, this is not characteristic of me. I’m (very) action-oriented. According to Stephen, I’m hyper-productive. I never stop strategizing and planning and executing on plans.

But first, I had to make peace with a few things before I could even begin mapping out our plans. The main issue was this: if I wanted to truly enjoy my vacation with Lily, I needed to bring a caregiver along. Could I take care of Lily on my own? Sure. Would I be completely exhausted and malnourished in the process? Yes.

Needing help was feeling like defeat to me. Especially when it comes to caring for my own kid. I’m not going to say I’m entirely over that feeling of defeat BUT I can now look at the upcoming few weeks with the knowledge that both Lily and I will have a fun, safe and restful time.

About me

A busy mom living in Manhattan, working full time in a job that I love and raising my sweet little L - the sweetest, prettiest, funniest, hardest working, smartest, bravest 7 year old out there, who happens to have a genetic disorder called Rett Syndrome.
This site is for family and friends to follow us on our journey of health, happiness and the occasional hospital visit.
For more photos and updates, follow us at @c_m_salerno on Twitter and salernochristine on Instagram.